To share or not to share

Many have noticed over the last two years and, some have written us directly asking, “Why don’t you show Baby K’s face?”

I began this blog years ago, actually the week Baby K was born. But life happened. And I kept waiting for things to calm down so I’d have time to finish this and publish it.

I would apologize for the delay but, well, life has been full these last 2 years. 😅

So I am finally sharing what I wrote in case you’re one of those curious ones wondering, “But where is Baby K?”

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As Brian and I waited impatiently for baby K’s arrival, we sat down to talk and pray through a few things.

There are many things I’m so grateful for right now, but one big thing is the amount of incredibly kind and loving humans that have grown to become part of our virtual extended family since Eloise was born.

The amount of advice, prayers, well wishes, love, and support we’ve received since Eloise arrived in early 2021 deep in the midst of the COVID pandemic has been awe-inspiring. I can tell you for sure that the world is full of many good human beings who seek to love and cheer on those of us who are struggling.

As part of that, it’s brought me so much happiness to share Eloise with our network. Because she is an absolute delight, and I love seeing how much joy she brings to so many by just being herself. She’s special. And I think the world needs to see her and lives like hers — to make room for her in our hearts and minds and communities.

But, when we began sharing, one thing we never expected nor planned for was how “internet famous” Eloise would become both in Estonia and abroad. On Instagram at the moment, her eloisethetinyfighter account has over 40,000 followers. (Thankfully, I noticed what gained her new followers and started doing the opposite to try to slow that down.) A vast majority of her followers never see Eloise’s stories or posts, but still. That’s a lot of humans.

The tiny nation of Estonia

Speaking of size, on the other hand, Estonia is a very very very tiny country. My midwife told me a story about an educational video they watched in high school about birth. During the short film, some guys in the back gasped, “Siim? Wait. Siim. Oh my gosh that’s SIIM.” They realized they had just watched a film about their friend’s mom giving birth to him. How weird would that be? 🙈

That’s Estonia for you. You’ve probably sat by the former president at a coffee shop (I have), had the current president visit your tiny startup office (✅), noticed the prime minister took a run with your coworkers’ running club at work (true story), photographed big name celebrities without realizing it (check, double check, triple check), hung out with the kid of the most famous comedian (yup), been interviewed on popular Estonian radio (guilty), and had your kid featured in the biggest family magazine (Eloise was). That’s Estonia. And all these things are no big deal.

Which is why it makes a lot of sense that most Estonians I know are very very very private on social media. It’s not uncommon — with people you know well — to not know they are ever pregnant or to see zero photos of their kids on social media. Because, well, they don’t post about it. Unless you see your friends in person, their private life may be a total mystery to you. Because if they made their life public, well — they might accidentally be sharing with the president’s family without even realizing it. 😂

So, chances are, whatever we share about Baby K on Eloise’s account will be known far beyond our close circle. Which is why I wanted to sit down with Brian and talk seriously about what we would and wouldn’t share about him.

Making our decision

So we did what we always do. We took some time to pray, listen, and wait for some thoughts.

And, well, we had them.

With Eloise, sharing made sense from the beginning. We were in a situation that was scary — we didn’t know if something was really wrong or not and we wanted all the prayers and support we could get. Plus, we needed to coordinate sharing in one central place so we didn’t get overwhelmed with responding privately.

And it helped. A lot. We got suggestions and advice and resources and direct support and, more than once, it changed the course of our and Eloise’s lives.

We struggled tremendously. We were isolated during Covid. And the community of our friends and family and coworkers that grew up around us virtually in those first months ended up, we think, literally saving her life. And, as time wore on, an even greater community built up of families like ours, making me feel connected and like we weren’t alone.

The thought that popped up during prayer for Brian was “Who benefits?”

Who benefits

Sharing about Eloise, we asked, “who benefits?”

• If prayers or good thoughts can heal someone, then Eloise will be top of the list thanks to everyone supporting her. Eloise’s miracles department benefits.
• When Eloise has a problem, I can call on the collective wisdom and experience of thousands of humans all over the world to find remedies. Eloise’s health benefits.
• For those who have never met Eloise, she can appear at first one-dimensional. She looks like a tragic case to be pitied. But if someone sees her first on social media, they can see she has personality. She has likes and dislikes. She’s a human being worthy of love and respect like other little kids. Eloise’s in-person treatment benefits.
• We also benefit in real life when someone encounters Eloise, because if someone ahead knows about Eloise in real life when we run into them, then we can skip the awkward silences and pity and pep talks and advice they often give when they find out.
• Disabled persons have been hidden away for centuries in Estonia and elsewhere. They often aren’t a part of normal society. They feel other than and foreign and scary in large part because no one sees them. So, by Eloise being on social media, strangers can see what a disabled kid is like. That they aren’t scary or sad all the time. That there is joy. And the more they feel they know Eloise, the more they feel they know someone with disabilities. The more likely they are to make decisions that include others with disabilities. And the less afraid they are of kids or adults with developmental problems or physical ailments. Which hopefully means they will be less afraid and more inclusive. Others with disabilities benefit.
• When strangers can see how much hard stuff happens, even among the beautiful times, they will develop a greater empathy for families acting as caregivers, because they can see it can be really really really hard at times raising these little ones. Other families with disabled kids benefit.
• The amount of humans I have come to connect with on sometimes a daily basis thanks to Eloise is astounding. I have an online network of other moms or just grannies who love her — it makes me feel like we are never alone and there’s always someone to talk to. I benefit.

Then, we moved the thought exercise on to Baby K. And the answers were much different.

I could see how other families wondering if they should have another kid would benefit. They could hear our struggles and triumphs and decide if the hassle was right for them, too.

I could see how Eloise’s community would love seeing Baby K grow up, curious what their relationship would look like.

I could see how much joy it would give me to share so many incredible moments with Baby K and watch others love him, too.

But, ultimately, as we really thought about it, none of these things really benefit Baby K.

During Soviet times, in Estonia, disabled kids were often immediately whisked away and hidden in an orphanage. Many still are. Today, I know a number of families with disabled kids here. Some still feel shamed by society or coworkers or friends or even family, so they choose to partially or fully hide their child’s disabilities from others as long as possible. Which means that, today, your average Estonian human is still not used to seeing disabled humans, and so they are still quite often uncomfortable with them.

Knowing that reality and how tiny Estonia is, if we put Baby K’s name or even face out there publicly, it would mean before Baby K had a chance to create his own identity, he would be “Eloise’s brother.” He’d be defined by her disability. Strangers who knew Eloise’s story may treat him with pity. Or disgust. Or expect him to somehow be a saint. None of which is fair.

Baby K never signed up to be Eloise’s brother. We want Baby K to be free to create his own identity, and choose himself how much he wants to share about his big sister or himself.

On top of that, one thing I began to think about a lot is my relationship and his relationship with our phones. Eloise doesn’t notice phones, but Baby K does.

First, I didn’t want Baby K to be afraid to be himself because he wasn’t sure what would end up on social media.

Second, I didn’t want Baby K to see the phone as something to perform for — already focused on creating an online persona he was worried about perfecting.

Finally, I wanted to be present with Baby K in the moment, rather than creating images and videos and stories to share about him to a bunch of humans I would probably never meet.

The bottom line — I don’t want to miss out on life with these kids

As you may have noticed, over these past 2 years, not only have I not posted about Baby K, but I have posted less and less about Eloise, too.

We dreamed of kids for years and we finally had them. Not just one, but two. And I have come to notice that the time I spent on social media was time I wasn’t present with them. If I was on my phone even while they were asleep, I wasn’t noticing how adorable Baby K’s breathing was or feeling how wonderful it was to hold Eloise in my arms. It was time I was distracted.

As I spent less and less time posting about life, it also meant I had to let go of responding to every comment and well wish and private message. I decided living life in real time with the people I love was far better for all of us, even if I still missed all of the kind encouragement and love sent by so many of you so often.

The conclusion

We have come to love you all. And to love your love for Eloise. And love your encouragement and wisdom.

Thank you for walking with us.

Besides, who knows, maybe someday Baby K will decide to share his story himself.

Hugs and love

Mallory, Brian, Eloise and Baby K